Congratulations to Margaret Chen, Shekar Saxena, Tarun Dua and all the staff of WHO as well as OECD for a fantastic first ministerial WHO Dementia Summit held in Geneva March 17 and 18th. Over 86 countries, all WHO regions, 45 NGOs and 50 academic and foundations were represented. I was officially listed as representing the Institute for Life Course and Aging at the University of Toronto, but also Case Western Reserve University and The Intergenerational School. I had the personal opportunity to meet the Global Dementia Envoy Dennis Gillings as well as have personal chats and public opportunities to hear Richard Hodes (NIA Director) , Harry Johns (Alzheimer’s Association CEO) , George Vradenburgh (foundation advocate for cure) , and Ron Petersen (Mayo Clinic) from the US. My fellow Brits continued their leadership started in London with the first G7 Legacy Summit in December along with France and Canada. What was amazing was the opportunity to move to a truly global perspective. ADI’s leadership is also appreciated of course.

What was also quite amazing was the absence of Alzheimer’s except somewhat from the US representatives. A search of the text of the briefing documents and a close listening at the two day event revealed that Alzheimer was usually only present in the titles of Alzheimer’s Societies and Associations and little elsewhere.

It is clear we are moving to public health, care system, prevention, and community approaches. Yet the title of the first day conference was “Care today, Cure tomorrow.” We were offered an opportunity to be photographed with a personally written placard for the digital documentation. Mine said “Care today, Care tomorrow, Cure good luck and Prevention yes.”

I asked two questions during the public session which were well received by WHO staff. In the session chaired by my friend Martin Rossor from London I asked what a cure would look like and how we could possibly find one (or an effective disease modifying drug) by 2025 (more about the Biogen immunotherapy in the news this week in another post). Martin directed this to Richard Hodes and also asked about cures for other dementias. To neurologist finding a i.e.one cure for a whole category of conditions called dementia makes little sense (preventing wars and childhood malnutrition would prevent many case of dementia). Richard said that the 2025 goal was “aspirational”. No one I know really thinks this is possible. The new Alzheimer’s Advocacy Act requires the NIH to submit a budget request to Congress asking for funds for Alzheimer’s. It will be interesting to see what they ask for. How much cure and how much care? It is time in my view to redress an imbalance of aspirations for cure with realistic opportunities in prevention and improving quality of life.

I asked Harry Johns who spoke somewhat surprisingly as an expert of risk reduction why he said evidence existed that cognitive decline could be reduced through risk reduction, but not adequately for dementia. I asked whether we should in fact take action now in the public health space. He said we should but what a bit value in his talk and answer about he relationships were between cognitive decline and dementia. In private Dr. Gillings also said he agreed “100%”with the idea of public health efforts although publicaly he has also questioned the evidence for prevention interventions and focused his public comments much more on drug development and the vexing problem of the price of any future drugs. More about that in another post also.

Peter J. Whitehouse, MD, PhD is Professor of Neurology and former Professor of Psychiatry, Neuroscience, Psychology, Nursing, Organizational Behavior, Cognitive Science, Bioethics and History. He is an intergenerative, narrative-focused evolutionary physician and health coach. His main passion is developing innovative learning environments (such as The Intergenerational School) to promote collective wisdom and contribute to individual, community, and planetary health.

Comments

Hello, Harry spoke as an expert because his brain is the brain that is going to take care of your brain, or at least that is what they boast. Frankly I still wear my helmet when I go bike riding. I know the helmet maker is not constantly on the make to raise more money to throw away on cure research.
Richard

An interesting article, although disappointing it did not highlight there were also people with dementia invited, and also representing themselves.

When I spoke at this event, just like the other plenary speakers, I had only 8 minutes as a invited key note speaker. I spoke as a person with dementia and as the Chair of Dementia Alliance International, to highlight what is important to people with dementia in the global dementia sector beyond the search for the very evasive and unlikely ‘cure’.

We want research for a cure, of course, who wouldn’t! But just as importantly, we want research for better care, for living beyond the disease, just like a person with cancer or who has had a stroke.

In my speech, I suggested the following three of topics are of significant importance to people already diagnosed with dementia are;

1. We have human right to a more ethical pathway of care
2. We are treated with the same human rights as everyone else, using the current Disability Discrimination Acts in our jurisdictions, and that we are recognised under the United Nations Convention on the Rights of Persons with Disabilities, like all other people with disabilities.
3. And finally, that research does not only focus on a cure, but on our pre and post-diagnostic care, and on pre and post vention including rehabilitation.

I am proud these three points were included in the Final Call to Action, and yet, to date, I do not see anyone talking about improving our pathways of support, nor including rehabilitation in our care. To date, we are still being excluded other than in tokenistic ways, usually to help encourage funders, and most often, it continues to be “about us, without us”.

Alzheimer’s Disease International have a global charter: “I can live well with dementia”. Not one organisation or health service is yet supporting us to do that, in fact, most don’t even believe it is possible. Of course, it is challenging to ask for money, if we are supported to live beyond dementia, and stop sitting in the basket of ‘suffers’; after all, it is all about money and big Pharma, isn’t it?

Questioning the evidence of prevention programs, or the risk reduction evidence is unhelpful. Supporting people with dementia simply to improve their perceived quality of life would be far more helpful and more ethical.

It seems, once I started, I have found it hard to stop… I have a lot more to say on this, but not enough time today! Thanks for the opportunity to join the conversation here anyway!